Bored Silly: Thoughts on Coping with Disability Retirement

So you’ve come to a crossroads, and at long last, you can breathe a sigh of relief. After years of stressing over keeping your MS a secret at work, hiding your ever-quickening slide down the slope of meeting deadlines, keeping up an insane workload and catching those accumulating mistakes you’ve been making more of over the past few years, you’ve won your SSDI claim and received your first check.

Gone forever is your individual spot in the outermost lanes of the rat race, watching your able-bodied peers whiz by without breaking a sweat. No more battling fatigue and brain fog after lunch and faking it until five o’clock, no more evenings collapsed on the couch, too exhausted to make dinner. And no more weekends spent in bed trying to rest up enough to start that race all over again come Monday morning. Now you’re free to live life at the pace you can handle. And you can do it without having to stand on a street corner brandishing a cup of pencils and a hat for donations to feed yourself and pay the rent. You can rely on that monthly check to come right on schedule for the rest of your life. You feel the bliss wash over you like a light spray of salt water on an ocean beach. The onus of pretense and conformity has been lifted off your shoulders and the resulting lightness of being almost convinces you that wings have sprouted where there once were two little organ grinder’s monkeys chattering in your ears and pulling your hair. Yes, Virginia, there really is a Santa Claus. Monkeys are way cuter when they are throwing their feces at each other behind bars at Simian World Amusement Park and Zoological Gardens. At last, you have been granted absolution. There really is a God, or karma, or favorable odds that have ticked around and landed at your feet with no strings attached. You can’t help but feel grateful, giddy, and really, really lucky.

The work world has no further use for you, you lucky human. You hated corporate Darwinism anyway, didn’t you? The game was rigged from the start. Failure was inevitable. You were doomed to rise to the level of your incompetence and then tumble down into irrelevance, effeteness, old age, attrition. But with this early retirement you have been spared the final humiliating last lap. Now come the years during which you can blossom into your true self. That’s wonderful. How are you going to do it?

Aye, there’s the rub. Your dilemma is Shakespearean. Or biblical. Or both. In any case there have been scores that had to muddle through it before you and there will be billions to slog through it after you are dust. Knowing that doesn’t help one whit, though, huh.

So. Now. Structure has been extracted from your daily life as though it were a festering molar. It might have been uncomfortable but at least it was familiar. Now you wake to a day that has no meaning except for whatever ideas and gestures you impose on it. The day becomes a direct reflection of your essence, your priorities, your values, and most important, your value.

So what is your value? Hm. Tougher than it sounds. Until this moment, our value has been defined by our lifelong social conditioning. We are groomed to live in a world with other humans, and that means appeasing others to a great extent. Hillary Clinton wrote that it takes a village to raise a child. John Donne wrote that no man is an island. Who’s gonna write the bit about the village-raised / grown-up mainlander who suddenly becomes like Tom Hanks in CAST AWAY, shipwrecked on a remote piece of the universe with no rudder except his own?

You are, that’s who.

Scared? Good. Excited, too? Excellent. You’re doing great so far!

To the scared little kid in you I would emphasize the difference between you and Tom Hanks in CAST AWAY. That poor guy had nobody, he had to make and do everything just to survive. He battled loneliness by anthropomorphizing a volley ball he named Wilson, fashioning a face on it with his bloody hand print. Unlike Tom, you have access to the internet at the very least for human contact. But hey, whatever works for you.

To the excited kid in you, I’d say you’re gonna feel like doing Snoopy’s happy dance at times and at other times, you might wanna wish yourself and some others into the cornfield for being such brat faces. But it’s always a kick to recognize your growth and get really jazzed when you realize you didn’t need the validation of the mainstream to become yourself after all.

I don’t know how your journey will take shape, but I can share a tiny piece of how my own journey has shaped me thus far.

Loneliness and boredom have been my two big issues. And yet, facing them has restored my old self. It’s one of life’s sweet ironies that the two things we fear most as adversaries of our quiet hope for restoration could bring us back to our bliss, both a physical return of sensation long dulled by nerve damage and the creamy froth of metaphysical contentment, that rich by-product that floats to the surface when we embrace the kind of moment that used to couple our Atman with our Brahman. You are happy, quietly and gleefully, for one sweet moment. It means everything.

It means that the wholeness of my identity is still intact. My blissful moment came last week while I was lounging on my patio flanked by my plantings, drinking coffee and allowing my mind to wander through my fantasies of the changes and additions I could make to my garden next year. That is my bliss, enriched and overwhelmed by a sudden revelation that my small garden space is just the right size to be lush and creative and at the same time small enough for me to weed and water all by myself. I never thought this could be, not ever again. It is humbling to meet myself again, like seeing an old friend after years of alienation. We picked up right where we left off without missing a beat.

In such a moment I feel no loneliness or boredom. It’s not that my life has suddenly changed in its structure or been raided by some external demand. Nothing has changed. It’s just that I am whole again.

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Comments

Well for me I was relieved when I was able to go onto SSDI. There was no way I could continue with my multi tasking/high pressure job. I was working 60 hours a week to try and get my job done. So glad that I do not have to do that anymore. Yes you need to stay as busy as you can. My MS is much more cognitive then physical but my mornings are very tough but I am able to do part time work and do other things to keep my self very busy. Will always have a to do list every day that will never go away and that is OK.

Wonderful piece, Kim, and wonderful peace shared here. I love living our happily ever after years. No SSDI for me, but a teacher’s pension which is adequate … like me. I often quote Carl Rogers: I am not perfect, but I am enough.

“No more battling fatigue and brain fog after lunch and faking it until five o’clock, no more evenings collapsed on the couch, too exhausted to make dinner. And no more weekends spent in bed trying to rest up enough to start that race all over again come Monday morning.”

That. Exactly that. Every day.

This morning, I finally took my boss up on his offer to move me to half time. Making the decision has been agonizing, but now that it’s finally here, your article – which I just saw on Twitter – is the universe’s way of letting me know that it was the right one. Thank you for being a ‘universal conduit.’ 🙂

Dear Kim,
Just a quick line to thank you ! That was the best, most uplifting piece I think I’ve read on the subject of MS. It seems to follow that the natural response to the loss of ones position in the working world (or Rat Race, let us not quibble over minor detail)is one of ‘oh woe is me’.
It’s so refreshing to hear a positive spin on what is such an unknown quantity. I live in the u.k., so my premature ‘retirement’ is in part aided by the PIP system, but it’s essentially the same, I suppose.
Of course there are attendant problems, MS is a collection of problems , an I have not yet had my ‘blissful moment’, as there are still obstacles in my path, but the greater challenge is always the frame of mind, so thanks for your positive take!